Month: August 2014

what website has the best RA info

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  Maneuvering the tangled jungle of internet information can be extremely frustrating. There is a lot of misleading information by reputable sites.  A lot of information is summarized and then vaguely  jumps to  faulty assumptions.  All this adds to our confusion.   Reputable resources may vaguely summarize information for patient information sheets. The American College of Rheumatology is a good  resource for general information about  RA.  However, patient information sheets are generalized and vague.  I wonder if the science writers think we are too dumb to get the real stuff.  A lot of our confusion about RA stems from getting peace meal information that is vague.  Rheumatologists actually do use the 2010 Rheumatoid Arthritis Classification Criteria to assist diagnosis.  Why don’t they tell us about it?  It sounds pretty black and white to me.  PubMed comments on the criteria show how the new criteria is the game changer tool to diagnose RA. The classification tree of the 2010 Rheumatoid Arthritis Classification Criteria is worth checking out. Johns Hopkins Arthritis Center is a respected source of Rheumatoid …

Rheumatoid arthritis progression attitude

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Rheumatoid arthritis sticks to me like glue.  Severe.  Persistent. Progressing.    OMG!    I have a tough one.  But then, so do many, many others.  I am alive.  I am grateful. Life is good.  Every minute of life is a gift.  Believe it or not, the biggest joys in our life happen in our everyday life.  Stop and think about it.  What are the five best moments you have had this week? Remember, this week your life is ticking by.  Life is now and a daily experience. Love it. Life has changed dramatically for me.  My pace is about 20% of what it was.    Am I sad.    Not.     Probably  because I am spending  my time  managing my day.  I’m living today. A lot of the maneuvering is  about energy and pain control.  So life is about balance.  A little of this and a little of that.  Breaking time into chunks. Working on re-potting plants. Then reading a good book or writing articles for a while.  Lucky for me I can do many of the things I …

RA Drugs-Methotrexate

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I take my 10 little pills of methotrexate on Sunday afternoon.  I put the ten 2.5 mg tablets in a little white bowl.  I take them over a 4-5 hour period.  My little ritual makes a major difference.  I have no nausea from the medication. My first dose was 2/17/2013.  It was 10 mg.  My dose was increased gradually to 25 mg on 4/28/2013.  Nausea is the most common side effect.  I did have some initially  but as long as I followed my ritual,  I was fine.  Additionally,  for the first year I was  tired on the day following the dose. Low dose methotrexate has been the drug of choice for the treatment of Rheumatoid Arthritis for 30 years.  It is safe and generally well tolerated.   It is a DMARD, disease-modifying anti-rheumatic drug.  It helps with pain and swelling.  It slows the progression of RA over time. Methotrexate was one of the first products of ” intelligent drug design”.  It was introduced as a treatment for cancer in the 40’s.  It was introduced to treat …

How the docs diagnose RA

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The course of RA is unique to each of us.  My RA announced itself  to me as  big and boisterous.  Initially, I had sharp pain in my left shoulder.  I thought it was from swimming as shoulders do get a workout in lap swimming.  Quickly hands, fingers, wrists, ankles, feet and toes joined in.  I was in total pain and largely incapacitated.  I sought salvation to my problem in the ER, the only solution at the time. In 2010 the American College of Rheumatology(ACR) and the European League Against Rheumatism(EULAR) formed a working group to replace the 1987 ACR classification criteria for RA with up to date classification criteria. RA is at its most destructive in the first 2 years.  It needs to be caught early and treated aggressively.  The 2010 Rheumatoid Arthritis Classification Criteria became a big diagnostic help. The group came up with a 10 point system that covers four RA categories:  joint involvement, serology, acute-phase reactants, duration of symptoms.  The target population for this scoring must be patients who have at least …

Susan

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I said goodby to Susan today.  She has  had a very interesting time of it.  Her life was full.  No one can ask for more.  I knew her for a brief period.  I was glad of it.  It was an important period in her life as well as in mine. I met her at a cancer support group.  She was angry as she had recently learned of a serious metastasis.  I had had a whirlwind bout  with a diagnosis of RA and sequentially two cancers.  I was trying to process as well as she. I saw her as the chemo failed and as she was denied her favorites of swimming and yoga.  I saw her as the last chemo drug failed.  She lost her anger and frustration.  She seemed to mellow.  Then she moved on.  She became engaged in planning her exit. The last day in our breast cancer group, we made bracelets.  She gave me her’s.  She used red beads as I was wearing red that day.  We had our final hug. She has …

Our humanity

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I was almost to Barnes and Nobles, one of my favorite hangouts. I stopped as a very old, bent woman in a blue print dress with a cream sweater was slowly moving across the street to    Toys- R-Us.  She inched along with her walker and I marveled at the effort and determination it had taken for her to go through all the motions to dress, to ease into her car after laying the walker in the back seat and to arrive at her mission. She was amazing. I see the same scene almost every day of someone working very, very had just to get a very simple task accomplished. There is something fundamental in our humanity that keeps us going through all the variations of hardships in our lives. It is a great quality we possess and it is to be celebrated.  

Swimming along

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Back in the water today!  18 lengths of the pool.  Felt good. Actually it felt great!  As you might have guessed,  the flare has faded.  I honestly never thought it would. I no longer live in a molasses haze.  My body’s level of pain is in an almost don’t notice state. Great to have energy again. Phew! RA is considered a rare disease of 1% of the population.  I also happen to have seronegative RA, those  being 30% of the 1%.  It does seem like a small club.  Mostly women, some men, even children belong.  RA belongs to the bigger club of auto immune diseases.  Fellow club members include those with Lupus, MS, Diabetes and almost another 100 diseases with faulty immune systems. RA is difficult for most of us for many reasons. The first is the pain which is incapacitating. The second is the extreme fatigue. The third is the totally unpredictable nature of the disease. We become  incredibly resilient,  live in the moment, seize the moment kind of people. An amazing club!   …